“31 million people are waiting for Congress to act.”
WASHINGTON, DC — As medical research and development continues to make leaps and bounds across the world, U.S. Rep. John Joyce (PA-13) appeared before a breakfast meeting of The Ripon Society yesterday, delivering remarks in which he discussed how America can maintain its place at the front of the pack in medical innovation and deliver medical breakthroughs for the millions of Americans suffering from rare diseases.
Joyce, who was first elected in 2019, is a Member of the powerful Energy & Commerce Committee where he serves on both the Health and the Oversight and Investigations Subcommittees. Prior to coming to Washington, Joyce practiced medicine in Pennsylvania as a dermatologist for over two decades. He uses his medical background to inform his daily, and often lifesaving, legislative decisions.
The Congressman opened his remarks discussing one of the many bipartisan legislative fronts on which he is working to protect access to cutting-edge cures for Americans – the Access to Innovative Treatments Act.
The bill which he is cosponsoring with Rep. Nanette Barragán (CA-44) would transform the way Centers for Medicare and Medicaid Services (CMS) determine the coverage of new treatments for diseases such as Alzheimer’s.
“This innovation is not inexpensive,” Joyce said, “but this innovation is what we need to prevent the number one cost of health care in America today, and that’s Alzheimer’s disease. … It is time to force the CMS to change that policy and to ensure that lifesaving and life-altering medications are available and accessed by those who need them the most.”
Joyce, who graduated medical school in 1983, reflected on the effect The Orphan Drug Act – which was passed that same year and “addresses the serious threat of the 10,000 diseases that are classified as rare diseases” – had on his medical career and what he is doing now in Congress to revive the bill after it was squashed by President Biden’s Inflation Reduction Act (IRA).
“In direct response to this, I have introduced the ORPHAN Cures Act, which would expand the Orphan Drug Act exemption to cover multiple orphan indications involving rare diseases and cancers.”
Joyce then turned his attention towards a bipartisan piece of legislation he’s working on with Democratic Congressman Wiley Nickel (NC-13) to develop life-changing genetically targeted technologies (GTTs) and ensure Americans have access to them. The legislation is called the MINI Act.
“GTTs were defined for the first time in the 21st Century Cures Act and captured two specific categories of therapies: small interfering RNA and antisense oligonucleotides,” the Congressman explained. “These are going to be the wave of future therapies. We have to be able to protect them.” But, the doctor noted, that the current standards for these drugs are mismatched and, “will disproportionately impact the innovation and the ability to bring these new drugs to market.
“Legislation like the Orphan Cures Act and the MINI Act are designed to bring more treatments, more cures, and more innovations to patients and to my constituents. And while an individual rare disease only impacts 200,000 people or less, over 31 million Americans are impacted by these diseases in the aggregate. 31 million people are waiting for Congress to act, and that action is voting on and passing and signing into law the Orphan Cares Act.”
The Pennsylvania lawmaker then discussed another bill he’s supported in Congress.
“I’m a proud co-sponsor of H.R. 1691, the Ensuring Patient Access to Critical Breakthrough Products Act,” he remarked. “This bill would establish an expedited pathway of four years of transitional Medicare fee for service coverage for medical devices that are approved and cleared by the FDA with breakthrough status.
“Once a medical device is deemed safe and effective by the FDA, we can’t allow the bureaucratic process to delay a senior citizen’s ability to access the best care that is available. That best care has always been in the United States, that best care should not be having individuals have to go to a foreign country to access something that is already FDA approved. Breakthrough technologies should not be kept away from a patient just because they’re in a Medicare plan.”
Joyce reiterated that the current legislation in place for medical innovation needs to be corrected today or else it will continue to “not only harm the patient access, but also jeopardize research and development of new devices.”
“I want you to think of me as a physician, as a legislator, and as someone who came to Washington to allow innovation to continue to progress because American individuals, American patients, American constituents expect that innovation,” the dermatologist said.
“We have to once again step up and allow innovation to be the cornerstone of American medicine. And Congress has a role in that too. Congress, specifically through Energy and Commerce, must allow that innovation to occur.”
On a final note, Joyce briefly discussed the importance of integrating Artificial Intelligence (AI) into everyday health care as well as research and development as an important tool to provide greater care and fill the gaps in the American health care system.
“A cardiac oncologist in D.C. has developed an AI program that evaluates cardiac echoes, a sonogram of the heart for kids in Uganda,” he recounted. “How does that transfer to a country doctor from Pennsylvania talking to a pediatric cardiologist in Washington? Because in my district, there are zero interventional cardiologists in the field of pediatrics. We’re interested in how we take that information and how we make that information and innovation available in a pediatric office – a pediatrician’s office in Gettysburg, Pennsylvania, in Chambersburg, Pennsylvania, in Johnstown, Pennsylvania, being able to understand that innovation is the cornerstone of what American patients and what American constituents expect.
“It allows me to keep that intellectual curiosity to be able to understand and share with others how important AI and the advancement of science on so many levels needs to occur. But that cannot occur in many cases without government involvement, government improvement, and government succession.”
Following his opening remarks, Joyce was asked about reports that the President plans to discuss several ideas to reform the nation’s health care system in his State of the Union Address, and if he believes that any of them will be realized.
“It sounds to me like the ideas of someone who’s down six to eight points in the poll,” he stated. “I think there’s zero appetite on the Republican side of the House to pick up what they were putting down if that comes to fruition in this discussion tonight.”
To view Congressman Joyce’s remarks before The Ripon Society yesterday, please click the link below:
The Ripon Society is a public policy organization that was founded in 1962 and takes its name from the town where the Republican Party was born in 1854 – Ripon, Wisconsin. One of the main goals of The Ripon Society is to promote the ideas and principles that have made America great and contributed to the GOP’s success. These ideas include keeping our nation secure, keeping taxes low and having a federal government that is smaller, smarter and more accountable to the people.